Negative labs but my body says otherwise

Hello,

I’m almost always on the Lyme disease board, as I do have Lyme and a few coinfections, plus several other chronic illnesses. It’s like a cascade of craziness. I started having symmetrical joint pain in my knees, fingers, wrists, and elbows about 2 months ago. Unbelievable pain. Lyme disease arthritis and RA, while more rare, can coexist. RA can offshoot from a person with a parent that has/had (deceased) an autoimmune disorder, and someone with Lyme disease and Bartonella (coinfection, Cat Scratch Fever), all of which I have in genetics and diseases.

I’m a former medical lab scientist, so I know to take lab results with a grain of salt, but I’m LOADED with several inflammatory illnesses. RA, ANA, CRP all came back normal. I didn’t ask for a sed rate (ESR) because CRP is the same only more reliable, in my opinion after 11 1/2 years of being a MLS. Out of those 3 tests, the CRP being normal is shocking to me. It never has been before. It’s been critically high.

Have any RA patients here had a sequence of normal labs after normal labs?

Thanks in advance for your replies.

Thank you for answering wearyRAsufferer. No pain is good pain, but I’m glad yours has lessened. The medical community is only taught to treat acute (short lasting ) illness (sniffles, urinary tract infections, a sore throat), so when it comes to those of us with chronic illnesses, they don’t believe us because they’ve never studied our diseases. Believe me, after spending as long as I did in medical lab science, they couldn’t generate a diagnosis without us and our lab equipment. They rely way too heavily on labs that they don’t even understand and they use our analyzer calibrated reference ranges instead of bothering to come up with their own. It’s out of sheer ignorance that they patronize us.

Don D said...
Yes, in fact I recently had lab work come back looking really good which surprised me but I am currently flared up and my pain levels are about double what they were only a month ago. I am sero positive RA and it runs in my family on both sides. I have never had my results come back looking good before like this though in spite of having a moderate flare up and I wonder if sometimes there is not a lag from manifesting symptoms to labs elevating in spite of actual inflammation that is observable.
I fast and follow a strict diet that has drastically cut the inflammation levels but not the pain unfortunately because of permanent damage. Now when I flare up my inflammation is much less obvious. It is still present however but nothing like what it was a few years ago.

Thank you for answering. Your last sentence makes complete sense. Would labs even measure long term chronic inflammation? The answer is most probably not. After close to 20 years (17 years untreated), my joints are probably damaged beyond what a serological blood test can pick up. I’m sorry that any of us has to go through this. It’s awful! I usually have to try a combination of 3 or more things to get the pain to lessen. Back and forth to the herbal/natural substances I have compiled as I Experienced an excruciating flare last night. 😔

wearyRAsufferer said...
Fade- what do you think of the Vectra DA lab test?
With all my RA lab tests showing normal despite pain- the Vectra DA showed that I had moderate disease activity with a score of 39.

As a scientist, a former medical lab scientist, and someone who has gone through extensive genetic testing, I firmly believe in genetic testing. There’s only so much that serological testing can accomplish. Doctors and patients alike are perplexed why their labs are “normal,” when the expectation is for them to show abnormalities; just as I started with in this thread. My brain, damaged by more than 19 years of parasitic toxins, wasn’t allowing me to think beyond serology when I posed the question I did.

I’ve read over some of the scientific research of the Vectra genetic testing for RA, and beyond an initial RF, ANA, CRP, and sed rate, these labs, while expensive, most certainly are a better gauge for how RA treatment is progressing or not progressing, keeping in mind that at best it can only be kept under some amount of control.

I have several chronic illnesses and now 3 autoimmune diseases. The complexity of balancing all of these and treating to get into remission and cured from the chronic illnesses that are curable, is so great that my doctor treating me is whole heartedly against me seeing a rheumatologist and being treated with biologics.

But, as a former medical lab scientist, and since I can’t take biologics, I don’t rely too much on lab tests. I will be frank and state that doctors are extremely dependent upon the work I did in the lab to “diagnose” or write off patients as hypochondriacs. They don’t focus on symptoms anymore, and frankly they’re not taught anything much more than pharmaceuticals in med schools. There’s a reason for that, but I won’t go into it. There’s a place for labs, but they’re overused and pricey.

With that being said, You brought up an excellent question for those who rely on biologics for treatment. If one can afford the genetic labs, I do believe that they are a great way to test the efficacy of treatment.